Meet-Up slated for employee/parent of special needs patients

It’s often said that Texas Children’s employees care for patients as if they were members of our own families. It’s a sentiment that makes Texas Children’s Hospital such a special place to work. But what happens when that feeling becomes a reality?

For many employees, Texas Children’s is more than a place of work, it’s a life line of care for their special needs and medically complex child. The dual role of a Texas Children’s employee and parent of a special needs patient offers a unique view of not only the Texas Children’s network, but the larger world of caring for a medically complex child.

The new Employee/Parent of Special Needs Patients group welcomes Texas Children’s and Baylor College of Medicine employees who are parents of special needs and medically complex patients to join us in our inaugural brown bag lunch meeting.

This first meet up will allow employees to get to know one another, share experiences like the ones below and develop future meeting topics and opportunities. Please contact Elisa Lange at erlange@texaschildrens.org for more information.

Online Support Group via Yammer

We invite you to also join us online via Yammer, where you can share your questions and resources with your fellow colleagues. To activate a yammer account and join the “Special Needs Parents Group”, contact the IS Service Desk at 832-824-3512.

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Having a child with highly complex needs calls for a plan with sometimes highly complex answers. Learning to navigate the health care system before I was a nurse is something I consider one of my greatest feats as the parent of a child with special needs. The system can be daunting, to say the least. How do you know which doctor to choose, what supplies you need at home, how to get on a Medicaid waiver? These were questions I didn’t know I had and only learned about once my son was discharged home from the NICU with a trach, g-button, and shunt. Figuring out the answers took a lot of research and question-asking from other parents who were in my situation. Then, when I began my career in nursing, a whole new set of questions arose around working full time with a husband and three kids, one of which required nursing, and frequent hospital visits. Thankfully, I work in a place that takes care of children like mine, so the support from my coworkers has been phenomenal in helping my family and I get acclimated to the change. There’s been some parents that are also parents of kids like mine who’ve been on this journey for a little while that have guided me through the system and helped me navigate this new path. Though our children’s diagnoses may be different, the journey has been very similar. And it’s through finding a community of compassionate individuals that understand what we go through that we’ve been able to build a successful network that supports us keeping Little Wade out of the hospital and at home happy with us. On the same hand, because we’re able to keep him out of the hospital, it helps alleviate some of the guilt of having to call in if Wade is sick and in the hospital. Not that calling in when your child is sick is bad, it’s just that having a child with complex issues lends itself to more opportunities for call ins, and then I feel terribly guilty for not being at work helping my team. Having a support network has been the most impactful in helping our family. I look forward to meeting more of you to create an even bigger network.

Rebecca White
Care Coordination, Transition Medicine

Prior to the birth of our son, Joseph Dash, my husband and I had settled into the daily grind of parenting two, school-aged children. To not only find out that we were having a third child, but also one with special needs, was quite overwhelming. However, we found some comfort and reassurance in the fact that I not only had a medical background, but also worked in a world-renowned, children’s hospital that would be able to provide for all of his potential medical, surgical, and developmental needs. Soon after his birth, however, I quickly learned that a medical degree and 6 years of residency and fellowship training had not necessarily provided me with the knowledge and expertise that would be needed to care for our son. Joseph Dash has [knock-on-wood] been quite healthy. We’ve had few medical complications, but continue to navigate our way through the “preventative” care and developmental aspects of his diagnosis. Although we’ve received excellent medical care through the many services at Texas Children’s, as parents, we continuously ask ourselves, “Is he getting the right therapy, or, does he need more?,” “Is this developmental growth or behavior typical or atypical for a child with Down syndrome?,” or “Are we doing everything possible to prepare him for the future (i.e., educational, financial, independent living)?” I have quickly discovered that these answers are not in medical journals, textbooks, and lectures, but found in the voices and experiences of parents and caregivers of other children with special needs. Although social networking groups and online blogs can provide some insight and direction, I have received the most valuable advice (re: organizational recommendations, local resources and schools, and state-specific governmental programs) from my Texas Children’s colleagues and friends who live a similar, albeit unique and individualized, path to my own. To build an organizational support group composed of Texas Children’s employee-parents would offer innumerable opportunities for idea sharing, collaboration, mentorship, and advocacy.

Dr. Kay Leaming-Van Zandt
Emergency Center

My little Gabriella has been a fighter since the second she was born in November 2015. During her traumatic birth, the NICU Rapid Response Team had to help her start breathing, and then Gaby spent a week in the NICU. My husband and I were so excited to be cleared to bring our second daughter home, but once we were there, my mother’s intuition alerted me that something just wasn’t right. After more than 50 specialist visits and 5 inpatient stays in Gaby’s first six months of life, we received a diagnosis. Gaby has Kabuki Syndrome, a rare genetic condition with a variety of symptoms including, low vision, hearing loss, low muscle tone, feeding difficulties, heart abnormalities, developmental delays, among many other medical issues. This new path in life for our family has been just that – new. With the new and unknown, we scrambled and searched on how to get Gaby everything we could to help her grow and thrive. Things like starting therapy, registering for government programs, making sure she was evaluated by all the right specialists is a full-time job and I remember thinking, “I wish someone would tell me what to do and when, and I’ll do it.” All of this coupled with having a newborn, taking care of our oldest daughter and processing our new reality of having a special needs child, made for the hardest year of our lives. Gaby is now 15 months old and doing great! It’s my hope that we can use our roles as Texas Children’s employees and parents of Texas Children’s patients to share information, learn from each other and teach others no matter where they are on their special journey.

Elisa Lange
Marketing

Note: Sharing personal and patient information during the meeting is completely voluntary. If you have any questions about your care, please contact your provider directly. Texas Children’s is not responsible for any advice, medical information or opinions discussed by individual employees.